Personal question ... how do YOU do it?

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Monimom
Posts: 28
Joined: Wed Jan 08, 2020 6:15 pm

Personal question ... how do YOU do it?

Postby Monimom » Thu Jul 16, 2020 6:54 am

I apologize for being nosey, but I am curious , for anyone that lost insurance coverage because of being out of work...... HOW did you continue treatment??

Quick overview... My DH was the spouse who carried our health insurance, he is also the one with this dreaded disease, our insurance is going to run out end of Aug... He's been waiting to be called back to his job from layoff.. but it still hasn't happened

regardless, our coverage ends end of next month, I have been applying for full time work so we will have benefits but so far nothing positive (yet) ... (DH has even applied for a new job ), TBH though we have NO idea HOW he even can have a job , NOT because of his physical condition, but it seems like chemo is designed for a patient to be unemployed...ie: infusions mon-fri, during working hours ... pump disconnect etc...how do you even find a job with that as a contingency ? ...

Obviously this is not something we had a "plan" for .. i'm sure it took most of us by surprise...

I have only worked part time outside of the home &I lost my job a couple of yrs ago, I went back to school but " life " kept me from being more diligent with seeking a new job, I could go on and on... but I wont.....

These are the things I have googled and learned so far

We can keep our coverage through COBRA, for a little while but at a hefty price, caveat is ....no asset limitations


SSDI is an option and that MEDICARE is automatic BUT... there is a 2 yr wait from approval before it covers...

MEDICAID... we are way over the asset limits for that...

I have looked at the ACA marketplace.. YIKES...

Its so hard going through ALL of this never mind heaping insurance worries on top...

just looking to see if someone has a story similar with any corrections to my current knowledge or any suggestions??
Thank you so much
Moni
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

Lee
Posts: 6059
Joined: Sun Apr 16, 2006 4:09 pm

Re: Personal question ... how do YOU do it?

Postby Lee » Thu Jul 16, 2020 5:50 pm

I am SO SORRY for what you and your family are going through. Your insurance should not be a problem that you have to deal with right now.

I don't have any personal experience, maybe some advice, hopefully others who have been down this road can offer their expert opinion.

Does your husband get treatment at a hospital or a clinic? Either one, there must be some employee or department that deals with insurance. Contact that person and explain your situation. This person should at least be able to give you some direction on what to do.

This was many years ago (before ACA), but there was a young man unemployed and dealing with a cancer diagnoses. The company that made his chemo donated the chemo to him. I hear on TV certain company makes certain drug to control diabetes or what ever. Usually at the end of these commercials a voice over will say, if you can not afford your copay, this company may be able to help. There has got to be a plan B for people in your situation. I'm just not sure what it is. Hopefully you will hear from others soon. But if not, try what I just recommended.

Good luck, and hugs to you both. You will be in my thoughts and prayers.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lee
Posts: 6059
Joined: Sun Apr 16, 2006 4:09 pm

Re: Personal question ... how do YOU do it?

Postby Lee » Thu Jul 16, 2020 6:03 pm

Monimom wrote:I

SSDI is an option and that MEDICARE is automatic BUT... there is a 2 yr wait from approval before it covers...


Moni


Get an lawyer who specializes dealing with SSDI. Because your husband is a stage IV, I believe he can/should be fast tracked (not a 2yr wait period), butt again he will need a lawyer who does this type of work for a living. If you try it on your own, you will probably be denied.

Again good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Gravelyguy
Posts: 311
Joined: Thu Jul 05, 2018 6:03 pm

Re: Personal question ... how do YOU do it?

Postby Gravelyguy » Thu Jul 16, 2020 6:49 pm

I was going to write what Lee did. I am pretty sure there is a fast track for stage iv cancer patients. I also think that most term life policies have a stage iv provision that allows a certain percentage of the policy value.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

martd
Posts: 124
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Personal question ... how do YOU do it?

Postby martd » Thu Jul 16, 2020 9:26 pm

SSDI has a compassionate review process for stage 4 cancer patients. It quick and easy. shortly after I applied they called me and took all my information over the phone. Approval is only a matter of a couple months. I was very surprised how quick and easy it was.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Monimom
Posts: 28
Joined: Wed Jan 08, 2020 6:15 pm

Re: Personal question ... how do YOU do it?

Postby Monimom » Fri Jul 17, 2020 6:18 am

Thank you for your replies,
Martd, I am aware that SSDI will expedite for stage 4 , but is that for Medicare or SSDI ? BTW, I read your tag line, how awesome that your scans are clear !
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

margiej
Posts: 99
Joined: Sat Apr 14, 2018 8:46 am

Re: Personal question ... how do YOU do it?

Postby margiej » Fri Jul 17, 2020 11:27 am

Hi, Monimom...my husband and I are 62 and 61, respectively, and are retired. We purchase insurance through the ACA. I don't know what your annual income is but for the two of us, if we can maintain our annual income under something like 67,000 we get our insurance subsidized. Currently we pay $0 for premiums after the subsidy. We have a deductible of $6200 each but after that we are pretty much free and clear. And with $0 premiums it's not too bad. We have put a significant amount in a Health Savings Account and add the max every year, so that is really helpful. Some things are automatically covered, like my 4 year colonoscopy this year. We have to be careful not to go over the income limit by taking too much out of retirement accounts or our subsidy would disappear and we would be on the hook for over $20,000 in premiums when we do our taxes. We have some Roth IRAs and withdrawals from those accounts aren't included in taxable income. Our whole health system sucks but I am optimistic we will have more and better options after the next election. Sorry if that's too much detail, but that's how we are making insurance work without employer provided coverage.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

martd
Posts: 124
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Personal question ... how do YOU do it?

Postby martd » Fri Jul 17, 2020 4:34 pm

Thank you, I'm not sure the process for Medicare. At the time I had medical insurance so I didn't even look into it. But I did eventually get Medicare. Earlier this year I received my Medicare card in the mail, apparently it was an automatic process, I never applied for it. And that would put it near the two year mark so maybe that's the case. I would suggest at the time of applying for SSDI inquire about it, hopefully they have a quicker process. Or possibly once qualifying for SSDI he might then be eligible for Medicaid.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

User avatar
cptmac
Posts: 1195
Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: Personal question ... how do YOU do it?

Postby cptmac » Thu Jul 23, 2020 6:24 pm

I'm so sorry you have to go through this.

Although I was not in the same boat, I had health insurance, but my insurance company initially refused to pay for my treatment.

The hospital had a grant program for people like me. At first, I didn't want to sign up for it, because it should go for the more needed AND the insurance company should pay for it.

Well, the problem was, this foundation had to give away so much money and people like me were too prideful to take it. I understand how grants work and how they would lost that money if people like me didn't take it.

So they contacted the doctors and they donated their time to my cause. I also qualified to have 60% of my treatment covered.

And then I worked with every available moment - no movies, no TV, no fun - you can ask my friends - and finally got the insurance company to pay for everything except $2000. I was tired of fighting and this took years.

The insurance company had to pay back the hospital - which was great.

And having 60% of my out of pockets costs covered was a Godsend. Because I was traveling 16 hours roundtrip for my treatment - with hotel rooms, gas - when gas was like $4 a gallon, took a toll on my finances.

So see if they have a program like that.

Also check out the Colorectal Cancer Alliance and see how they can help.

https://www.ccalliance.org/patient-fami ... e-programs
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

Rikimaroo
Posts: 305
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Personal question ... how do YOU do it?

Postby Rikimaroo » Fri Jul 24, 2020 2:25 pm

Hi Monimom,

My health insurance is through ObamaCare. We have a small business and run all our expenses through it and it makes our income around 50K...With that income you can get BCBS Insurance possibly, I didn't look at where your located. We pay $197 a month for an insurance that is usually $1k a month. If your husband loses his job, he qualifies for a life changing event and can apply for insurance through healthcare.gov

If your salary was high last year, then it might be hard to get something cheap. I am sorry your going through this. It's a horrible situation on top of the fact your husband is fighting cancer, I can relate. Chemo is so difficult to do, I get my next treat this Wednesday and just the thought nauseates me. I get the pump for 2 days as well then disconnect on the third day. I can barely work during those day, but I am lucky I work from home since we own our own small IT firm.

Good luck and I hope things work out. So Sorry your going through this!!/.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

Carboxo
Posts: 19
Joined: Sat Nov 02, 2019 5:10 pm

Re: Personal question ... how do YOU do it?

Postby Carboxo » Fri Jul 24, 2020 7:17 pm

Some hospitals have what is called a “Queen’s Care” account. Ask about their charitable accounts. They are able to use it to cover medical expenses for a certain period of time when you don’t have insurance. You shouldn’t have to worry about this and especially because of COVID. I know the market place is crazy but go to the Administration of the hospital where husband is getting treatment and ask for help. The patient financial services area. They can help you with this. Good luck
DS: caregiver
48, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

User avatar
horizon
Posts: 1542
Joined: Tue Apr 12, 2011 10:10 pm

Re: Personal question ... how do YOU do it?

Postby horizon » Sun Jul 26, 2020 8:02 am

I wish I had advice to give. It makes me angry that you're both having to go through this. The whole system is so screwed up.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

NHMike
Posts: 2464
Joined: Fri Jul 21, 2017 3:43 am

Re: Personal question ... how do YOU do it?

Postby NHMike » Wed Aug 05, 2020 2:40 pm

I was RIF'd two days ago and will go on COBRA and the exchanges after that. That's the plan anyways.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

hondo77
Posts: 3
Joined: Wed Aug 05, 2020 7:56 pm

Re: Personal question ... how do YOU do it?

Postby hondo77 » Wed Aug 05, 2020 8:16 pm

I was laid off back in December 2018. Got my diagnosis in February 2019--my last official day with my company (severance). Figures, right? My oncologist's office right away got my state disability paperwork going. Don't know if that is available to you but in California, state disability is much better than SSDI. It allowed me to afford COBRA (which was NOT cheap). After a year disability ran out but so did my treatment, which was a nice coincidence. After that I went on unemployment and Obamacare while I looked for a job. Because my income was so low on unemployment my medical was subsidized and was pretty cheap. Now I'm employed so things are good.

I guess the takeaway from all this is: check with your oncologist to see about what options are available to you. Hopefully they're on the ball and can point you in the right direction, whether that's federal or state or whatever.


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